An Ottawa couple share their experience of SIDS

Blair Crawford, Ottawa Citizen07.06.2016

Rohit Saxena and his wife Lesley Spencer lost their daughter, Jaya, to Sudden Infant Death Syndrome recently - just a week before she turned six months old. However, crippled by grief as they are, they need to get up and put one foot in front of the other every day because of their three-year-old son, Navin. JULIE OLIVER/POSTMEDIAJulie Oliver
/ Ottawa Citizen

When he woke up in tears the morning after he had cried himself to sleep, Rohit Saxena knew what he had to do.

Leaving his wife, Lesley, asleep in bed, Rohit went downstairs, opened his laptop and began to write.

“They say your kids are your hearts outside your body,” he wrote. “I’ll always be grateful that we got to share our heartbeats with each other, even if my heart will always be broken for it. Let’s remember her.”

“Her” was Jaya Anita Spencer Saxena, age six months, who died June 4 while Rohit and Lesley Spencer, 37, an emergency room physician, were vacationing in North Carolina with Jaya, their three-year-old son, Navin, and family friends.

“I wanted to tell her story,” says the 36-year-old engineer. “I wrote down everything I was feeling. I wanted people to get to know her. She was only a baby. She was just six months old, but I think she still had the dignity of a story to be told and it was important for me to tell that.”

SIDS is not a subject that many grieving parents will talk candidly about.

“That’s a problem,” said Lesley “It’s the same thing with infertility and pregnancy loss. It’s a taboo subject. You’re supposed to just get over it.

“Having a dad reach out and say ‘This is really hard and it makes me cry.’ That’s a good thing. It’s OK to have these strong emotions as a man.”

It was Lesley who found Jaya, lying cold and still in her crib. Having worked in the ER, Lesley was accustomed to death. She’d broken terrible news to families before, performed CPR on patients — even other infants — but it all meant nothing that afternoon in the rented beach house.

“To try to work through the finding her and when it’s your own daughter and having to do CPR on her. … And I knew. I knew when I saw her. I knew she was already dead and there was no point, but I couldn’t NOT do it either….”

To Lesley’s relief, a friend at the house quickly took over the desperate resuscitation attempts. Rohit, who had been at the beach with the other families and their children arrived back at the beach house just as the first ambulance arrived, the first in what would soon be a small army of first responders.

Lesley is grateful that they, too, recognized the hopelessness of the situation and spared Jaya the indignities of intubation, defibrillator shocks and IV drips.

“They put an ECG on, checked her heart, saw it wasn’t beating and stopped it there,” she said. “I’m so thankful for that because she didn’t need her little body violated that way.”

But there was one more thing to do. Lesley had stripped Jaya to just her diaper to do the CPR and now watched as the paramedics wrapped her tiny body in towels and placed her in the ambulance.

She and Rohit searched for a tiny onesie they’d bought, one that had a silkscreened acorn and the words “I will be mighty.” Then they dressed her one last time.

“I just didn’t want her to be cold,” Lesley said, her voice trailing off into tears.

The family spent four more days in North Carolina, attending to the formalities of death. They got a death certificate and proof of cremation. Oddly, they were advised to send Jaya’s ashes home to Ottawa by parcel service as an easier and safer way than carrying an urn in their luggage.

More than 300 people came to Jaya’s memorial service in Ottawa, most of whom had never met her. Strangers who read Rohit’s essay online reached out to support them.

“We’ve heard from people who’ve had all kinds of losses,” Rohit said. “There were people I’ve known from work or school and I had no idea they’d suffered some kind of loss. Then something like this happens and they reach out privately, with a lot of courage, just to say ‘I’ve lost somebody. I’d like to help you through the stages of this.'”

The couple have read books about bereavement and attended grief counselling sessions through Roger’s House.

“You don’t realize how many people are still grieving a child that they may have lost years ago,” Lesley said. “You don’t talk about it. Nobody talks about it. After six months, people will say, ‘Oh Rohit and Lesley … they had baby a few years back that died. But for us, it’s still going to be ‘Jaya’… not ‘a baby who died.'”

In his essay, Rohit offers tips to friends on what they and other grieving couples need: “Keep socializing with us, even if we didn’t normally before. We may not be able to accept every invite, but give it a couple of tries and we’ll do it,” he wrote.

And: “Lesley and I worry that that we’ll feel alone and isolated in our grief in the weeks, months, and years to come. Please save some kind words, thoughts, deeds, and love for us, and check in with us periodically, even if you have to put up with a few more tears over a few more years than you expected.”

The couple are bracing for other, unforseen events that they know will trigger grief. Like when Lesley arrived at the airport last week for a previously planned trip to Halifax to see her parents.

“When I checked in, Jaya was still on the reservation. She was supposed to be my ‘lap infant.’

“There are going to be anniversaries we anticipate are going to be sad, like the first day of school. But there will also be things that we don’t expect. Maybe 10 years from now, maybe a little girl goes by and we tear up because ‘I wonder if she would have looked like that?”

Meanwhile, the couple draw strength from tiny gestures — one of Rohit’s friends and co-workers planted a garden in Jaya’s honour in New Mexico; Lesley’s father’s gardening club is planting an oak tree for Jaya in Halifax. While in North Carolina, the first responders offered help and support as they navigated through the American red tape.

And they draw strength from Navin, who inherited one of Jaya’s stuffed toys, a frog named Ribbit.

“Just the other day we were at the park and I was teaching him how to roll down a hill,” Rohit said. “And part way down I teared up because I felt that I wasn’t ever going to get to teach Jaya the same thing, to roll down the hill with her. But I still had to keep rolling down the hill for and with him. That made me feel better.”

Sudden Infant Death Syndrome is the No. 1 cause of death for babies between the age of 28 days and one year in Canada. Ninety per cent of the deaths occur before the age of six months.

SIDS “is the sudden and unexpected death of an apparently healthy infant under the age of one which remains unexplained, even after the performance of a complete autopsy,” according to the Baby’s Breath, formerly the Canadian Foundation for the Study of Infant Deaths.

There is no known way to predict or prevent SIDS deaths.

The rate of SIDS deaths in Canada has been declining since the 1980s.

Boys are nearly twice as likely to die of SIDS than girls. SIDS deaths are more likely to occur in winter than in summer.

Though there is no known cause, researchers have identified risk factors such as premature birth, low birthweight and being sick with a mild infection. Maternal smoking during pregnancy is also considered a high risk factor for SIDS.

The Canadian government released a statement in 2011 that, among other things, recommended babies be put to sleep on their backs and recommended against sharing the bed with an infant to reduce the risk of SIDS or accidental suffocation.

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An Ottawa couple share their experience of SIDS

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When he woke up in tears the morning after he had cried himself to sleep, Rohit Saxena knew what he had to do. Leaving his wife, Lesley, asleep in bed, Rohit went downstairs, opened his laptop and began to write. “They say your kids are your hearts outside your body,” he wrote. “I’ll always be […]

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